When my grandmother died this summer, I got a glimpse of how poor end-of-life care is in this country. A fall triggered a week-long stay in hospital and two months of exponential decline. Like thousands of others, her hospital stay was prolonged not because of medical necessity, but because a safe care plan needed to be put in place before she was allowed to return home. Around 250,000 people in England were waiting for a care assessment in August 2023, the Association of Directors of Adult Social Services estimated. In September between 11,783 and 14,324 patients remained in hospital each day who did not meet the criteria to stay, according to NHS England data. The higher figure represents one in eight general and acute beds in England.
My mother began calling agencies to secure 24-hour, live-in care so my grandmother could return to the home she had lived in for more than 60 years. In the interim, she was moved from ward to ward. Seven weeks later, she died. As peacefully as possible, at home. While it was clear in those last weeks that she had had enough and was in pain, she retained her dignity and was deeply cared for. But this kind of death is uncommon and beyond the means of most. In-home end-of-life care comes at an enormous cost – £10,000 a month in my grandmother’s case. Is it any wonder people are left in hospital to deteriorate?
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This is one of my major difficulties with the Terminally Ill Adults (End of Life) Bill, which was introduced to parliament on 16 October. The Health Secretary Wes Streeting says he “[does] not think that palliative care, end-of-life care in this country is in a condition yet where we are giving people the freedom to choose, without being coerced by the lack of support available”. I agree. And, like Streeting, I also agree with the principle of the bill: allowing people to die with dignity and without unnecessary suffering. But I struggle to know what the right answer is.
Palliative care is in a desperate state. The hospice sector’s finances are the worst they have been in 20 years. Earlier this month, the charity Hospice UK revealed that the hospice sector was getting more money from its charity shops than from the government: £504m, compared to £466m.
But it is not just the inadequacy of social and palliative care that’s problematic. Much of what has occurred in countries where assisted dying is already legal troubles me. In the Netherlands, which became the first country to legalise euthanasia for those “experiencing unbearable suffering with no prospect of improvement” in 2002, the lives of children as young as 12 can be ended with parental consent. Official figures from the country’s Regional Euthanasia Review Committees show the number of people seeking euthanasia has been growing since 2010. In 2023, the 9,068 assisted deaths represented 5.4 per cent of total deaths in the Netherlands. The large majority were aged over 60; more than half (5,105) had cancer. But 40 of those who died were under the age of 30. Two were aged 16 or 17.
Dutch law allows euthanasia on both physical and mental health grounds. Last year there were 138 assisted deaths of those with a mental illness. In 2019 there were 68; in 2010, just two. The demographic profile of these patients is different to those dying on physical health grounds. An analysis of those who requested euthanasia on the grounds of psychiatric illness from 2012 to 2018 found the majority of patients whose request was granted were single women aged under 60 with a diagnosis of depressive disorder. Eighteen per cent were younger than 40. One woman was under 20. More recently several cases involving young women who ended their lives because of mental illness made the headlines, including 17-year-old Milou Verhoof and 29-year-old Zoraya ter Beek. Was death really the only thing that could help these women?
Canada, the only country to have more deaths by euthanasia in absolute numbers than the Netherlands, has delayed a planned expansion to its medical assistance in dying programme to include those who have a mental illness. Yet Canada is cited by those who warn of a “slippery slope”: that laws initially limited in scope – such as the one proposed in the UK – expand eligibility over time. When it was introduced in 2016, Canada’s law allowed assisted dying only for adults who were terminally ill and “suffering intolerably while in decline”. It was extended in 2021 to include people whose condition is “serious and incurable” – a far more nebulous definition. Medically assisted deaths have risen every year, from 1,018 in 2016 to 13,241 in 2022; they now account for 4.1 per cent of all deaths. In 2023 the president of Quebec’s commission on end-of-life care, Dr Michel Bureau, told the Canadian Press: “We see, more and more, that the cases receiving medical aid in dying are approaching the limits of the law.”
The UK proposals are not as permissive as the law in Canada or the Netherlands, but they should be approached cautiously. It is far easier to give the right to an assisted death than to take it away. The role of doctors, traditionally preservers of life, would change fundamentally. Just as those such as Esther Rantzen, suffering severe pain and seeking a choice over their death, must be listened to, so too must those who share the actor and disability rights campaigner Liz Carr’s fear that poor, disabled or mentally ill people may end up feeling compelled to have an assisted death.
The arguments proffered by proponents and opponents of assisted dying are compelling and emotive. It is impossible not to be moved by both. My heart says, yes. My head is not sure. But if I had to choose, I believe the UK is not ready for this law.
[See also: The menopause industry is a murky area of women’s healthcare]
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This article appears in the 16 Oct 2024 issue of the New Statesman, Make or Break